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    #16
    Oh
    denise
    Forum Member
    denise don't tell me you say grarse....for grass ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚
    โ€‹โ€‹
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      #17
      lynda oh yes i do. im posh. hey when i started school in the infants i was a typical northern kid but told off for speaking like one. so i had to change my ways. weird really because where i lived in stevenage it was kids from london and the north east mainly and some from scotland. so we all ended up speaking the same. no doubt it would be like that now because we'd all have to embrace diversity.
      when i can think of something profound i will update this.

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        #18
        Originally posted by Barry52 View Post
        I can recommend the SpeakUnique app to use with your own voice or a choice of regional accents. Like Lynne I started with the Modeltalker system but find the Predictable app is not as user friendly.
        Iโ€™m interested to hear that you like the Speak Unique app, Barry, as I find that thereโ€™s at least one common word in every sentence that it doesnโ€™t recognise and therefore mispronounces or stutters over. This leads to the listener being unable to understand what Iโ€™m trying to say and so they lean over my shoulder and read the screen instead, which rather negates the whole point of having the app. I might just as well type something out in the first place if itโ€™s not going to be clear enough for someone to understand.

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          #19
          It's all moot when you're mute. ๐Ÿ˜‚๐Ÿ˜€๐Ÿ˜๐Ÿ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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            #20
            Originally posted by SallyAnnB View Post
            Iโ€™m interested to hear that you like the Speak Unique app, Barry, as I find that thereโ€™s at least one common word in every sentence that it doesnโ€™t recognise and therefore mispronounces or stutters over. This leads to the listener being unable to understand what Iโ€™m trying to say and so they lean over my shoulder and read the screen instead, which rather negates the whole point of having the app. I might just as well type something out in the first place if itโ€™s not going to be clear enough for someone to understand.
            Hi Sally Ann,

            I wonder if this is due to the voice banking or a system issue i.e Microsoft or iOS. The only pronunciation problem I have is proper names or symbols which I type out phronetically.
            Iโ€™m going to do this even if it kills me!

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              #21
              Itโ€™s a bit odd, Barry. Two of the words it wonโ€™t recognise are ought and bought, but if I type ort and bort it says them clearly. Iโ€™m not surprised that it doesnโ€™t recognise duvet (although my free app does) but there are so many words that are not clear. I went back and back to the developers at first but in the end, I just gave up. It gives us a bit of a laugh at times.

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                #22
                Hi Linda,

                when i was first diagnosed 3 years ago i was fortunate enough to be asked to trial voice banking. Iโ€™d never heard of such a thing and to add that to everything else at the beginning was a little too much. However i went ahead with Acapela and although my husband kept saying i was using my โ€˜telephone voiceโ€™ i completed the trial. Your post reminded me of it and i logged on to my account and messed around with it. I was pleasantly surprised as it did sound like me! As was mentioned earlier, it was important to me that i kept the hard Aโ€™s and said bath and path properly (!) Initially I didnโ€™t realise that my voice could be affected (I had stayed away from the internet) and I was hung ho about any trial that came my way. I would say to anyone who can still speak to think about voice banking. I know we all have many many things to consider, but the fact that I got this done early on means that its one less thing i have to worry about in the future.

                Good luck. X

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                  #23
                  Oh
                  Sarahw
                  Forum Member
                  Sarahw I so get what you are saying. We all do it even though we know we shouldn't. Denial. That's our Elephant! ๐Ÿ˜๐Ÿค—๐Ÿ˜๐Ÿ˜˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                    #24
                    Originally posted by Sarahw View Post
                    Hi Linda,

                    when i was first diagnosed 3 years ago i was fortunate enough to be asked to trial voice banking. Iโ€™d never heard of such a thing and to add that to everything else at the beginning was a little too much. However i went ahead with Acapela and although my husband kept saying i was using my โ€˜telephone voiceโ€™ i completed the trial. Your post reminded me of it and i logged on to my account and messed around with it. I was pleasantly surprised as it did sound like me! As was mentioned earlier, it was important to me that i kept the hard Aโ€™s and said bath and path properly (!) Initially I didnโ€™t realise that my voice could be affected (I had stayed away from the internet) and I was hung ho about any trial that came my way. I would say to anyone who can still speak to think about voice banking. I know we all have many many things to consider, but the fact that I got this done early on means that its one less thing i have to worry about in the future.

                    Good luck. X
                    Thanks for the reply and your experience. I'm certainly going to try banking...yes bath and path and glass lol it's part of who I am. It's so very sad to think of losing our voice so it seems to me well worth banking if possible. I use to love to sing but not possible....some ppl may be relieved about that!
                    I think my voice is increasingly ragged so maybe too far gone if so I might rope in my daughter who has always been mistaken for me on the phone. But I'll have to teach her the hard A sounds ๐Ÿ˜‰

                    I live in hope๐Ÿ‘
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                      #25
                      Hi
                      I have the predictable App but just practicing with it at the moment as I can still speak although my voice is affected and weaker.Itโ€™s the thing I dread most as conversation is so enjoyable.I canโ€™t imagine having no speech.I know many people on this forum have lost their speech and plod on using whatever app suits them.At least there is some way to communicate rather than being locked in completely.
                      It remains another hurdle to cross as I journey along this path .Niv , RiG and voice banking all seem to be essential in my life now.Voice banking done early on but like others who use predictable I wouldnโ€™t say it sounds a lot like me.Certain words are mid pronounced too.
                      Just grateful at least I will be able to communicate at a basic level.
                      Best wishes
                      Mary

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                        #26
                        I honestly find the Boogie Board a better option while my fingers work ๐Ÿค—๐Ÿ˜˜๐Ÿ˜๐Ÿ˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                          #27
                          Hi Matthew, did you buy the Boogie board or are they provided via NHS.?.I am just looking at options for myself as voice is getting weaker.
                          Best wishes
                          Mary

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                            #28
                            I bought mine on Amazon ๐Ÿ˜˜๐Ÿ˜๐Ÿ˜๐Ÿค—xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                              #29
                              Thanks Matthew..Did you try any other communication Apps.?
                              Glad the boogie board works for you though.
                              Feels like I am on another learning curve.Want to sort out what might work for me ..So far only tried Predictable.
                              Best wishes
                              Mary

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                                #30
                                Any app will do at the moment ..๐Ÿ˜˜๐Ÿ˜๐Ÿ˜๐Ÿค— xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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